transcript - entire interview

transcript - current chapter

19:04:27:08 - 19:06:01:00

Lisa: Where did families go for help at that time?

Patricia: Well, that's what I was asking. Who would tell you what to do? When I asked the families where did they go for help? I mean. I went to Dr. Spock, right? That was the big thing and there wasn't much in the way of self-help books back in the fifties and sixties when I was raising kids but we could go to Dr. Spock and Dr. Spock could tell us when it was time to feed him solid food and when it was time to help them put their shoes and socks on but what to expect and... but when they don't follow Dr. Spock then what do you do and that's when I realized that it was... what did the family doctor do? What did the pediatrician say about allright it's time to put them on solid food and they're still having difficulty swallowing formula? Well how do you get from that to the other thing? Where are the steps in between? And I remember being very puzzled by how come we didn't have a curriculum for this?

19:06:28:16 - 19:08:13:06

Patricia: Where's the procedure book for telling you how to get a child who doesn't swallow well to move from baby formula or baby cereal and go to the next level to pick up the cheerios and eat them, right? And I couldn't find that procedure in any old place and I honestly felt that's what we needed. We needed to know how do we get from one step to the next step to the next step with the children just to help in activities in daily living is what this is called in nursing jargon or ADLs and of course in nursing we were always very fond of our letters. Things were always, you know, in different things. I wanted to do something with ADLs and so I asked the teachers what they did, how were they working on it? Was this something they were working on in the classroom? And it was very difficult for them because of course there was no curriculum for them either. If there was no nursing procedure manual for me there was no teaching manual that said do this, that, or the other thing to have a child learn how to button. So they had button boards and they had lacing boards, you know, and they would try with that but when a child doesn't even have good gross motor skills, fine motor skills, they don't even have good sitting posture, those things are much harder to accomplish.

19:08:14:05 - 19:11:02:16

Lisa: Pat, I wanted to ask you a little bit more about the support in the classroom and the teacher's role in a minute but I'm curious, still curious, about your home visits. You described a lot of your interactions as being with mothers. It certainly was that era where mostly mothers were home with children but I'm wondering if you had opportunities to speak to fathers as well.

Patricia: At that time, no. Fathers were mostly out of it. In fact if there was one thing that caused great consternation in the family it was the fact that this was a very difficult thing. Having a child that was disabled was very hard for a father to accept and to get involved with. We have to remember that 40 years ago fathers weren't as involved in dealing with children. That's come about since women have entered the workforce and we have stay at home dads and all of that but in 1970 dads were off to work and if they weren't at work or if there wasn't a dad present he really wasn't present and wasn't active in the child's life. Now that didn't seem to be quite so strange to me at the time because I had a husband who was not that involved with the children in what we're talking about in activities of daily living, you know, feeding the child and diapering the child and that kind of thing but the thing was different was the fact that the feeling of failure for both parents was very present. That their child was different was a failure, that they couldn't get their child to sleep at night, or sit at the table or do any of the things that would give them the sense of family life like we're supposed to have family life. That was the thing and so if the mothers felt the failure the fathers did too and they mostly presented that as far as I could tell from my limited experience in going into the homes that they stayed out of it totally and that just made it worse for the mother as any other mother could tell you. It takes a village to raise a child so if you don't even have the parents involved it really is tough.

19:11:17:03 - 19:14:09:00

Lisa: How important do you think, based on your operations/ your home visits, how important was it to address the impact of disability on the family as a whole?

Patricia: It was significantly important; very important. I was amazed to find out that so many of the older, I don't mean the Tom Thumb children, but those who had perhaps been through Tom Thumb or maybe never even had the Tom Thumb experience but those children who were at home with the parents and were now young adults or even young teenagers were being treated for a mental illness, emotional problems, depression, clinical depression, things like that and that really didn't seem fair, did it? I mean you know you already have an intellectual disability and now you have a mental health issue too. And how does that happen? And that is what happens even where there was the best of support, I thought, from my limited ability to say what is good support at that time. I was amazed to find out how many of the children were being seen by psychiatrists for mental health issues too. So did that make a big impact on the family? Of course it did; the whole family and you can't ever take out... we seem to always talk around the child; the child himself or herself but you know they wanted so much to be liked and to do things and to be able to have the same kind of life as they saw their siblings so that they did have depression and they were upset and that was something I wasn't prepared for. I don't know what kind of world I thought I lived in but I wasn't prepared for looking at children who already had one kind of disability having another. Now I can accept the fact that they might have physical disabilities and many children who have physical disabilities; many children with Down syndrome have heart problems and many children who have spine bifida or hydrocephalus and that kind of thing have other problems and that's enormous physical illnesses for the families but when you add into it that they also had mental health problems I just thought that was ... couldn't we do something? Couldn't we do something?

19:14:09:05 - 19:14:53:06

Lisa: So, Pat, you were a nurse. You had your medical knowledge. You were a young mother yourself. If you had a child with a disability with a child at home do you think you would have known how to provide routine care?

Patricia: No. Not with what I knew at the time. If we're talking about 1971/72; no, I didn't know what to do. I wouldn't have known what to do. That's what I saw when I would go into the classroom and I said what can we do? We've got to be able to do something but no I didn't have that procedure book to help me so we have to write the procedure book is what we have to do.

19:14:53:22 - 19:16:05:26

Lisa: I've heard in other conversations with parents that some parents were told by doctors "Just take your child home and love them." While I think that's a kind sentiment I wonder was it enough? What kind of practical...did doctors offer any practical tools?

Patricia: No. Taking them home and love them; that's really ridiculous. Of course you love your child and that was the evil of taking the child away and putting it in an institution. Never did that stop the mother from loving that child, ever, but "Take the child home and love it" didn't help with, you know, if they didn't sleep at night, didn't react in the way that they, that you would think or the way the other child had reacted or grandma said do this and the child would be fine and the child wasn't. No "take them home and love it" wasn't the answer. Take them home was the answer but you have to do something else. I thought. That's what I thought.

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